Wednesday, March 27, 2019

APF Merchandise

Please get your APF Merchandise today all sizes have been updated in the line item description. Prices are now on clearance. If you see a zero in the size you want we will NOT be ORDERING and ask that you choose another item. Watch out in the next week for the new tshirts-umbrellas-super nice-APF bags.

https://porphyriafoundation.org/store





 Thank you for supporting the APF
& Porphyria Warrior!

USA CANADA EUROPE UK ASIA PAKISTAN RUSSIA We shipp anywhere for an additional fee once an order is placed we will contact you via FB or Email to get your permission of international fee

Friday, March 15, 2019

Alie Campbell VP

ALIE CAMPBELL

PORPHYRIA and ME
TYPE OF PORPHYRIA
My story is probably not much different than most. I was misdiagnosed most of my life, sent to psychologists because physicians just couldn't find a cause for my illness. Finally, after an incorrect Lupus diagnosis and a week of testing, I received my Variegate Porphyria diagnosis.
As a child growing up in Tampa, FL, I would constantly complain that the sun hurt my skin and my eyes but "children" were not supposed to wear sun glasses. Today I am rarely seen without them, day or night. I craved sweets and of course "children" should not eat too much sugar! I went to a boarding school most of my life and "they" had the same rules about sun protection and sweets the same as my parents. For reasons like this, I have always wanted to write a book "If you Can't See it...It Must Not Be Real" for all of "us" who are ill but it can't be seen, and so it must be in our "heads"!!
How might I be different? I have always known I am a survivor in life and have tried to maintain a positive attitude. At a very early age, I chose the "high road". I have pushed myself both mentally and physically to go beyond and not make my disease a focus in my life. I worked hard to receive a good education, eventually owned a successful cooperation, raised three step children and married twice. Now I ride and show horses (jumpers), work out daily and volunteer whenever I can (I have recently been helping women coming out of prison to assimilate back into the business world) and continue to look for areas and people to add to my life.
I have not had the best experiences with physicians. I was made worse by a physician claiming I would NEVER meet anyone else with my disease. He was like many physicians, who know very little about the disease and read only one chapter in medical school. Nonetheless, he was a self-proclaimed expert on porphyria with his own "treatments." I am alive today after surviving his dilation toxicity for three years and having a gland removed by his surgeon friend. This left me with permanent double vision at three and half feet out. Thus, reading is almost impossible for me other than my large computer screen.
Next, I broke most of my fingers and had another serious problem. I am going through implant surgery now because of mishandling by a dentist. Then I was left bleeding to death in "after surgery" care, overdosed with morphine, followed by a surgeon who was drunk and performed ovarian surgery incorrectly. I could go on, but I suffice to write this to let you know "we" must be our own advocates in health care. I still seek the good in all I meet and do believe there are wonderfully talented and gifted physicians, but my experiences have certainly caused me to be vigilant over my own care. As for porphyria, I thank God for Dr. Anderson, his colleagues and Desiree.
My attitude is to count my blessings, allow myself some few "moments" of self pity...pick myself up and move forward. We all have challenges in life and sometimes hurt so badly that it is hard to live another day--but we do. We need to share information and stories, support to each other and always keep our sense of humor. I try to look at what I have rather than what I don't have.
In the end it will always be our "attitudes" that drive our lives. As a very wise man long ago told me, "You have two choices in the morning when you start your day" for whatever reason, hearing him tell me on that day changed my life, and I say this to all of you hoping I can make the same difference. Good luck and God Bless!

Thursday, March 14, 2019

Porphyria Post

Porphyria Post
FDA Announces Interim Commissioner
On Tuesday, the Food and Drug Administration announced that Dr. Ned Sharpless will step in as acting Commissioner following the resignation of Dr. Scott Gottlieb last week.
Sharpless is an accomplished researcher, oncologist and administrator. He was named director of the National Cancer Institute in October of 2017 following his position as director of the University of North Carolina Lineberger Comprehensive Cancer Center.
Alex M. Azar III, secretary of health and human services, stated that this position is temporary and the FDA is continuing their search for a permanent commissioner.
ATTENTION ALL SHADOW JUMPERS!!
FIND YOUR SHADOW 2019
applications are due in just 2 days!!
Don't miss this opportunity for a trip to Disney for your family!!
Click here to apply TODAY!
URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!!!
Do you experience pain due to Acute Porphyria? Please take 5 minutes to submit a comment TODAY to help the federal government develop official guidelines.
A government task force is addressing how to manage pain in the face of the opioid crisis. Their recommendations will become the guidelines for all government agencies.
The American Porphyria Foundation has been very involved in this committee.
Now it is your turn to make public comment. It doesn’t need to be long or perfect. Time is of the essence.
Your comment should include:
- Your diagnosis
Sample: I was diagnosed with Acute Intermittent Porphyria fifteen years ago at the age of twenty-six.
- Description of your pain
Sample: “worst pain in humankind,” “torture,” “feels like a thousand flaming swords,” “inhumane,” “feels like coals burning in my abdomen,” etc.
- Unsafe drugs trigger an Acute Porphyria attack
Sample: Acute Intermittent Porphyria is a pharmacogenetic disease. If I take an unsafe drug, it will cause an attack which includes extreme pain.
- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
Sample: My physician has prescribed and managed safe opioid use for my disease for 10 years.
- Any personal details you would like to share
Sample: I have been called a drug-seeker for requesting opioid pain management even with a diagnosis. I have been sent away from emergency rooms and hospitals.
Porphyria Awareness Week - April 6-13, 2019
Porphyria Awareness Week 2019 is less than a month away and we want to hear what YOU are doing in your community to spread the word!
Jason Sumney (AIP) is raising awareness for Porphyria and the APF at the Pittsburgh Vintage Mixer on April 6th, 2019. Megan Dunn- Tonhaeuser and her children are purchasing wristbands and handing our Porphyria Fact Sheets at their school.
The opportunities are limitless so email porphyrus@porphyriafoundation.com and let us know what you have planned for PAW 2019!
Acute Porphyria members...Your help is needed!
Attention All Acute Patients!!
Have you had trouble getting PANHEMATIN in a hospital for ANY REASON - please contact the APF on 866-APF-3635 or email porphyrus@porphyriafoundation.org.
We need to hear your story. The APF is gathering your patient stories to prove that this is an issue across the US and to advocate for access to treatment on a federal level.
Volunteers Needed!
The APF will be exhibiting at the 2019 ACMG Annual Meeting in Seattle, WA April 3-5 AND Digestive Disease Week in San Diego, CA May 19-21. Are you local to the area and interested in volunteering at our booth? If so, please contact Edrin Williams, Director of Patient Services, for additional information at edrinw@porphyriafoundation.org or 301.347.7166.
This is an incredible opportunity to raise awareness about porphyria to those with little knowledge about this rare disease.
RSVP Today
Patient Education and Support Meeting- Ann Arbor
LOCATION
Holiday Inn
DATE AND TIME
03/16/19 1:00pm - 03/16/19 3:00pm
3600 Plymouth Road | Ann Arbor, MI | Room: Wolverine A | Family and friends are welcome to attend!
I'll be there!
Maybe
I can't make it
Patient Education and Support Meeting- Seattle
LOCATION
Seattle Public Library- Central
DATE AND TIME
04/04/19 5:30pm - 04/04/19 7:30pm
1000 Fourth Avenue| Seattle, WA | Room: Washington Mutual | Level: 4 | Family and friends are welcome to attend!
I'll be there!
Maybe
I can't make it
Patient Education and Support Meeting- Boston
LOCATION
Morrill Memorial Library
DATE AND TIME
04/06/19 2:00pm - 04/06/19 4:00pm
33 Walpole Street | Norwood, MA | Room: Simoni | Family and friends are welcome to attend!
I'll be there!
Maybe
I can't make it
Get Involved
• Research •
 Donate 
• Visit our Website •
Contact Information
Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com
American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org
STAY CONNECTED

"Remember....Research is the Key to Your Cure!"

Wednesday, March 13, 2019

Telemedicine Consultations

Telemedicine Consultations

If you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically.
A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston.
To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit.
During the teleconference, Dr. Anderson will discuss your case with you just as he would during a regular office visit. This project was funded in part by a grant from the American Porphyria Foundation.

Physician Information Kit Available

Upon request, the APF will send a comprehensive physician education packet on the acute porphyrias to physicians. It includes educational materials on the diagnosis and management of the acute porphyrias; information on biochemical and genetic testing; Panhematin treatment for the acute porphyrias; and a recent article from the Annals of Internal Medicine on diagnosis and management of the acute porphyrias.  Please call our office at (301) 347-7166 to order the kit.
In addition, the APF will also send information on PCT and EPP to physicians upon request. Please call our office at (301) 347-7166 to order the packet.
These packets are delivered via USPS, for physicians only.

Porphyria Slide Set

This PowerPoint slide set provides valuable information about porphyria, including discussion covering porphyria types, causes, diagnosis, and treatment protocols. It also includes vital information focusing on Panhematin® (hemin for injection).
Please give us a call 1-866-APF-3635

Monday, March 11, 2019

Member Story Diana Van Houten PCT

DIANA VAN HOUTEN

TYPE OF PORPHYRIA
Last summer I was babysitting my four grandchildren at my daughter's house while they were on vacation, I noticed a large blister on my hand and thought I had splattered grease on it. After I went home a week later, I had more blisters on my hands of different sizes. I had a really big one on my right hand, and every time I shook hands it would hurt.
A friend suggested that I should sterilize a needle and drain it. I did so and put Neosporin on it as well. Needless to say it got infected, so I went to the Dr. and he started running tests on me. After several tests, he found my liver enzymes were high, so he sent me to a dermatologist who did a biopsy of a small blister and had me do the 24-hour urine test. That is when I found out I had Porphyria Cutanea Tarda (PCT).
Next I started the phlebotomies. On Dec. 1st, the 8th time the Dr. did the blood draw, I got what I thought was the flu and was so sick, I could not go anywhere without falling back on the couch, out of breath and I was very weak. My best friend told me to call the Dr. and she would take me as I couldn't drive. I did call and she took me to see my regular doctor. His nurse walked in and took one look at me, and said I was anemic. The doctor checked me and said I needed iron. I told him I couldn't because of my porphyria.
Later my other Dr. called me after they all talked and said that I would just have to rest. I eventually started felling better.
In January of this year, the doctor took another blood test that was better. Now I am going in every three months for my blood checks. The scars on my hands are fading slowly. My granddaughter says your "owies" are better and I can hold your hands, and my skin is not so fragile as it was, although I am a grandma and most grandmas have fragile skin, it should not be that fragile yet.
I was noticing some of the other symptoms of PCT, and I just went to the Dr. complaining of pain in my arm, hands, and insomnia.
Where I live they don't know much about porphyria. My life is so much better now, but I still stay out of the sun, avoid alcohol and estrogen, and yes my problems could be much worse. When I think about the plight of other people, I thank God every night for my health. Good luck to everyone.

Friday, March 8, 2019

AHP- URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!

URGENT! URGENT! PAIN COMMENTS NEEDED ASAP!
Make a public comment today through this link: https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001
These comments will help inform the federal government about the needs of patients with Acute Porphyria as they develop federal guidelines.
Patients, caregivers, and physicians can all comment. Share this link with others.
- Why you are writing
- Your diagnosis
- Description of your pain
- Unsafe drugs trigger an Acute Porphyria attack
- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
- Any personal details you would like to share
Don't wait - take 5 minutes and do this right away!

https://www.regulations.gov/comment?D=HHS-OS-2018-0027-0001&fbclid=IwAR3KC8ZSv0C7ks9wVSOElsF6t-cvs_-pt4Ts-5C2yDxNR1stpeKo796Fizw

Wednesday, March 6, 2019

PORPHYRIA AWARENESS WEEK - APRIL 6-13, 2019

PORPHYRIA AWARENESS WEEK - APRIL 6-13, 2019

Over the years this time honored tradition has inspired porphyria patients to go out and educate their community on porphyria. Over the years many great ideas have been put into action such as, in 2014 when Amanda Rich made purple bracelets for porphyria survivors or in 2015 when Victor Mejias hosted a fishing tournament for the APF. In 2018, Cassie Tucker and her son created a T-shirt campaign to raise awareness for EPP and donated part of the proceeds to the APF! This is the time to use your hobbies and talents to spread the word about porphyria. There is no limit to what you can accomplish!
What does 2019 hold? Murphy McNutt (PCT) is organizing a fundraiser for the APF at her fitness studio. She is planning a "ride" with the support of the studio owner and plans to have riders wear purple! Check out Murphy's story on the APF website Member Stories, visit https://porphyriafoundation.org/member-stories/murphy-mcnutt.
Over the next few weeks, the APF will be sharing resources and tools for you to create awareness in your community. Need ideas? Give the APF office a call on 866-APF-3635.
Let us know what YOU are planning and together let's PAINT THE WORLD PURPLE!

Judy Snyder Personal Story of AIP

JUDY SNYDER TYPE OF PORPHYRIA Acute Intermittent Porphyria (AIP) It was early April 1997, and I was truly enjoying my job as the...